by Paul Govern
People with intellectual and developmental disabilities (IDD) tend to encounter distinct sets of health problems as they transition to adulthood.
Launching in January, a series of online learning sessions hosted by Vanderbilt Kennedy Center will bring together stakeholders who wish to see research advance toward understanding and solving the health problems that tend to affect adults with IDD.
The learning series/research project is seeking participation from adults on the autism spectrum and those with Down syndrome or other disabilities. Parents, spouses or adult siblings of people with IDD, clinicians who care for these patients, and researchers with an interest in working with people with IDD are also eligible for the research learning sessions.
“This project will create a better understanding of what is truly important to people with disabilities and their families, and avoid the common assumption that we as researchers and clinicians know what is best. We have as much to learn from our stakeholders as they do from us,” said the leader for the project, Beth Malow, MD, professor of Neurology.
All Stakeholders Engaged in Research Together, or ASSERT, as the project is called, is currently seeking 20 participants for its series of 12 twice-monthly sessions, taking up to 90 minutes each, running from January through June. (At $75 per session, participants will be paid up to $900.) Topics will include building trust within the disability community, informed consent, choosing research questions, sharing results with participants, and becoming better consumers of research. Participants will also complete a series of brief surveys.
Participants will identify research areas that address the needs of people with IDD and their families, building toward co-creating research proposals focused on improving health outcomes in adults with IDD.
Malow and her team have assembled a regional advisory board for ASSERT, including individuals on the autism spectrum, parents of individuals with IDD, clinicians, and researchers.
For more information see the project webpage.
